A Heart’s Journey:

A Patient & Caregiver Guide to Heart Transplant

The heart transplant experience through the eyes of patients, caregivers, and clinicians.

Illustration of a doctor and patient speaking to each other. The doctor is holding an iPAD with an image of heart failure surgery on it.

Table of Contents

Introduction to Heart Transplant
The Path to Transplantation
The Heart Transplant Surgery
The Post-Transplant Experience
Support Resources
Partners and Acknowledgements

Our Partner Organizations

UHN Ajmeera Transplant Centre Logo

Introduction

Receiving a heart transplant is a life-changing journey, you may be wondering about your treatment options. This site provides heart failure patients, caregivers and families essential information, personal stories, and resources to guide you through every step—from understanding the transplant process to navigating recovery and beyond. Whether you’re a patient seeking clarity or a caregiver looking for support, this space is designed to empower, educate, and provide strength for the journey ahead.
Illustration of a doctor speaking to a patient, both sitting on a hospital bed.
Person reading a booklet about living with advanced heart failure

Introduction

What is Advanced Heart Failure?

Advanced heart failure is a stage of heart failure in which the heart’s ability to pump blood is significantly impaired, even when a person is at rest or with minimal activity. This means that you may experience persistent symptoms, such as fatigue, shortness of breath, and fluid retention, despite optimized medical treatments and lifestyle adjustments. Advanced heart failure typically requires specialized interventions, including mechanical support devices (e.g., ventricular assist devices), continuous intravenous medications, or heart transplantation, to improve quality of life and survival.
Learn more about Advanced Heart Failure

Introduction

What is a Heart Transplant?

A heart transplant is a surgical procedure in which a failing heart is replaced with a healthy heart from a deceased donor. It is typically considered when all other medical therapies have been exhausted and are no longer effective. The procedure involves removing the recipient’s damaged heart and connecting the donor heart to the major blood vessels. Unfortunately, a major limitation is the scarce availability of suitable donor organs. Because of the critical shortage of available organs, strict criteria must be met before a patient is considered as a potential candidate for a heart transplant. It is also important to understand that, while heart transplantation is a lifesaving therapy, it is not a cure. Although the failing heart is replaced, receiving a new heart requires one to be on lifelong immunosuppression, which increases the risk of infection, diabetes, and cancer.
Illustration of a doctor and patient speaking to each other. The doctor is holding an iPAD with an image of heart failure surgery on it.

Introduction

The Transplant Journey

A map showing the journey of a heart transplant patient in order: pre-transplant assessment, surgery, discharge from hospital, first 3 months post transplant, and living well post transplant.

The Path to Transplantation

The Pre-Transplant Assessment

A pre-transplant assessment consists of medical tests and interviews with members of your transplant team. These are intended to make sure you’re healthy enough for your operation. The pre-heart transplant assessment can take up to weeks or months to be completed. If you deteriorate while you are being assessed for a heart transplant you may need to be admitted to the hospital so we can complete the assessment. It is extremely important that you inform the transplant cardiologist or the transplant nurse coordinator if you get sicker at any time during your heart transplant assessment process. After your pre-heart transplant assessment is completed, a discussion with the transplant team will determine whether:

 

  • A heart transplant is your best option
  • Other treatment options would be more beneficial to you
  • You are too healthy or too sick for a heart transplant
  • You have a condition that would preclude you from having a heart transplant
  • You have a social habit you need to quit before you are accepted for a heart transplant (smoking, drinking, drugs)
  • You are emotionally prepared to deal with the wait time for a donor heart and the recovery process after a heart transplant
  • You have the social support to assist you before and after a heart transplant
  • You are prepared and willing to follow the steps required after a heart transplant (frequent tests, appointments and medication schedule).

The Path to Transplantation

Transplant Candidacy and Alternatives

Once your assessment is complete, your cardiologist will present your case to the transplant team. The team includes other heart failure cardiologists, surgeons, anesthesiologists, social workers and nurses. The team will decide if it is safe and in your best medical interest to receive a heart transplant. The team may also decide that you may be suitable for an LVAD (left ventricular assist device) also known as a mechanical heart. You will meet the LVAD team and a patient with an LVAD who will show you the device and explain their experience. This will be a scheduled surgery. After you recover from the LVAD surgery, you may be a candidate for heart transplant.

If the team decides you are not a candidate for heart transplant or an LVAD, you will continue taking your heart failure medications. You may be referred to the palliative care team that help patients and families improve their quality of life when facing problems related to life-limiting illness. Their goal is to prevent and ease suffering and pain. They can assist with symptom management related to shortness of breath and sleep hygiene. They can also provide psychosocial and spiritual support for you and your loved ones.

Patient walking a dog. Patient is wearing an LVAD device.
Learn more about LVADs
Learn more about advance care planning

The Path to Transplantation

The Heart Transplant Journey: Janet’s Story

Janet reflects on her journey as both a heart transplant recipient and family member of a heart transplant recipient. She emphasizes the importance of self-care – not only through physical health, but also by maintaining social activities and hobbies. She encourages both transplant recipients and caregivers to stay engaged with life and maintain a sense of humor, hope, and gratitude. Janet’s story is a testament to resilience and living life fully, despite the challenges posed by heart disease and transplant.

The Path to Transplantation

The Assessment Algorithm

a graphic showing the steps of the heart transplant assessmnet

The Path to Transplantation

The Heart Transplant Journey: Shelly’s Story

Shelly shares her heart journey that began with a congenital heart defect and led to a heart transplant in her 50s. She recounts her hospital stay as a time of support, routine, and connection—with daily visits from loved ones, regular exercise, and camaraderie with fellow patients. She emphasizes the emotional ups and downs of the process, the importance of taking things one day at a time, and the power of community, especially through her post-transplant support group, which reminds her of how far she—and others like her—have come.

Learn more about preparing for Heart Transplant surgery and the Heart Transplant wait list

The Heart Transplant

Getting the Call

A transplant coordinator will contact you when a potential donor offer becomes available. Please ensure your phone is always on and you answer all phone calls. The coordinator will screen you for recent infections. It is important to be honest. An existing infection could cause complications after transplant. The immunosuppression after transplant will make it more difficult to fight the infection. Once you are called, do not have anything to eat or drink.

You will be told a time to arrive at Toronto General Hospital (TGH). Please arrive at the Admitting Department at TGH Elizabeth Street Entrance with your OHIP card. You will be admitted to the Coronary Care Unit (CCU) on the second floor. You will have your blood drawn and receive a chest x-ray. The CCU team will usually insert a “PA line” to assess your pulmonary pressures. You will meet the surgeon, anesthesiologist and the heart failure team on call and go over the procedure with you and your family. Sometimes a heart transplant surgery may not go ahead while you’re waiting in the hospital due to several factors. The donor heart must be a suitable match in terms of blood type, size, and overall condition.

If complications arise, such as infection, organ failure, or worsening health, you may become too unwell for surgery. Additionally, logistical issues like transportation delays or last-minute medical assessments could also prevent the procedure. In some cases, if a more urgent recipient is identified, the donor heart may be allocated to them instead.

Learn more about Heart Transplant surgery from hospital admission to discharge

The Heart Transplant

The Six Steps of Heart Transplant Surgery

Step 1

The anesthesia team will put you to sleep under general anesthetic and may insert some special intravenous catheters and a foley bladder catheter if not already done in the CCU. You will also be draped to keep you covered appropriately during surgery.

Step 2

Once you have been fully anesthetized, the cardiac surgeon will make an incision through the sternum (breastbone); this is called a sternotomy incision. The heart is then carefully exposed. This can take a bit longer if you have had prior cardiac surgery before due to the presence of scar tissue and adhesions.

Step 3

The heart-lung machine is then connected to the great vessels which allows the blood to bypass the heart and allow circulating blood to flow uninterrupted to the other organs. The aorta is clamped off, the heart is then removed, leaving both vena cava (great veins draining into the right side of the heart) plus a cuff of the left atrium in place.

Step 4

The donor heart is then sewn into place. The donor vena cava are attached to your original vena cava. The donor aorta is connected to your original aorta, and the left atrium of the donor heart is attached to the existing cuff of left atrial tissue.

Step 5

The heart is then restarted, and once it begins beating on its own, the heart-lung machine is gradually turned off and removed. The surgical team will monitor the heart function and monitor for any signs of bleeding (sometimes for a few hours) before closing the chest. A temporary pacemaker is inserted, and chest tubes are placed in the chest cavity for drainage.

Step 6

Typically, you will then be ready for transport back to the intensive care unit to begin the recovery process. Note: Occasionally the heart is slow to start working and has reduced pumping function. This is called primary graft dysfunction and occurs in a minority of cases. In this situation, the surgical team may decide to support the heart for a few days on a heart-lung machine (also known as extracorporeal membrane oxygenation or ECMO) to allow the heart to recover more gradually. This is usually done in the operating room before returning to the intensive care unit.

The Heart Transplant

The Heart Transplant Journey: Michelle’s Story​

Michelle’s heart journey began when she experienced a spontaneous coronary artery dissection shortly following the birth of her son. She has since received two heart transplants at Toronto General Hospital. Michelle reflects on the emotional weight of the process, the importance of support systems, and her deep gratitude toward both of her donors and their families. Now five years after her second transplant, she celebrates life and the time it has allowed her to spend with her loved ones.

The Heart Transplant

Heart2Heart Podcast Series

Learn more about the Heart Transplant experience in Heart2Heart, The Heart Hub’s podcast series dedicated to telling the stories of patients and caregivers in the heart failure community. Join Anne Simard as she interviews Kyle, a husband, father, and heart transplant recipient.
Listen to the Podcast Series
Image of a women speaking into a microphone
Illustration of a patient lying in a hospital bed, speaking to a nurse standing beside them.

The Post-Transplant Experience

The Hospital Stay Post-Transplant

Moving to the ICU After Surgery

Once your surgery is complete, you will be taken to the CV (cardiovascular) ICU to recover. While you are in the ICU, you can expect:

  • A ventilator that will help you breathe for approximately the first 24 hours while the anesthesia wears off. You will be able to communicate my nodding your head and moving your limbs. Once the ICU team deems you ready, you will be extubated and will be breathing on your own.
  • You will have multiple IV lines to deliver medications and check the pressures in your new heart. The lines will be in your neck, wrist and possibly the groin.
  • Four or 5 chest tubes assist in draining the fluid that may collect in your chest. They will be removed once the drainage slows. This is usually 24-72 hours post-surgery.
  • The Acute Pain Services team will manage your pain. When you are intubated, the medical team will administer pain medication. Once you can speak, do not be afraid to ask for pain medication. When pain is controlled, your body will move more easily, and this will help you recover faster and avoid infections.
  • The medical team will also start administering immunosuppression or anti-rejection medication to keep your body from rejecting the new heart. These are lifelong medications. The dosages will change depending on your bloodwork and biopsy results.

Most patients stay in the ICU for 3 to 6 days after transplant.

Moving to the Step-Down ICU
Once you are deemed stable enough, you will be transferred to the Step-Down unit on the Transplant floor. Your new heart will still be continuously monitored, and you will be working with the physiotherapy team to build up your strength and learn how to safely maneuver with the sternotomy site. The nurses will continue to check your blood work and administer your medications.
Moving to the Transplant Floor

The last step of your hospital journey will take place on the Transplant floor. When it is time to take your medication, your nurse will bring the supply and ask you to pull out the correct medicine and dose. You may also meet with a pharmacist. This will help you and your family feel comfortable and knowledgeable about the new immunosuppression medications before discharge. The medications you will take will be very different from the ones you took pre-transplant. Your nurse will go over medication symptom management, as well as how to manage medications for other conditions such as diabetes. As you near time to leave the hospital, you will meet your new post-transplant coordinator who will teach you about caring for your transplant and how to recognize potential complications. The discharge coordinator will make sure you are enrolled in the MyUHN Patient Portal. This is how you will communicate with your transplant coordinator once you are discharged. It will also be explained how you can reach out to your donor’s family/loved ones if or when you choose to do this.

The Post-Transplant Experience

Discharge from the Hospital

A checklist for discharge from the hospital following heart transplant

The Post-Transplant Experience

Caring for a Heart Transplant Recipient

Illustration of a man and woman sitting on a sofa. The man is handing the woman medication to take.
Being a caregiver for someone going through a heart transplant is a challenging journey. You become their source of strength, comfort, and hope through every step—from the anxiety of waiting for a donor to the ups and downs of recovery. There will be long nights, tough days, and moments of fear, but also incredible joy in seeing them regain their health. It’s important to take care of yourself, too, because your love and support mean everything to them. Caring for someone going through a heart transplant can be overwhelming, but here are some tips to help you navigate this journey.
1. Stay Organized
  • Keep a notebook or digital record of medications, appointments, symptoms, and doctor’s instructions.
  • Set reminders for medications and follow-up visits.
2. Educate Yourself
  • Learn about the transplant process, potential complications, and signs of rejection or infection.
  • Understand physical limitations your care recipient will face after surgery, such as the inability to drive or undertake certain physical activities.
  • Ask the medical team questions so you feel confident in providing care.
3. Take Care of Yourself
  • Make time for breaks, even if it’s just a short walk or a few deep breaths.
  • Eat well, get rest, and seek emotional support when needed.
4. Build a Support System
  • Don’t be afraid to ask family and friends for help with meals, errands, or emotional support.
  • Join a caregiver support group—online or in person—to connect with others who understand.
5. Be Patient and Encouraging
  • Recovery can be slow and emotional. Celebrate small progress and be a source of positivity.
  • Understand that your loved one may experience mood changes, fatigue, or frustration.
6. Watch for Warning Signs
  • Be alert for symptoms of infection (fever, swelling, redness) or rejection (shortness of breath, weight gain, fatigue).
  • Monitor for medication side effects.
  • Call the medical team if anything seems off—trust your instincts.
7. Plan for the Long Term
  • Life after a transplant requires lifelong medication management and lifestyle changes.
  • Help your loved one adjust to their “new normal” with patience and encouragement.
  • Most importantly, remember that your role is invaluable. You are making a difference every single day, even when it feels tough.
Learn more about caring for someone with heart failure

The Post-Transplant Experience

The First 3 Months After Transplant

The first three months after your heart transplant will likely be the most challenging, with many changes to navigate. Here’s what you can expect:
What to Expect: Physical Recovery
The initial six to eight weeks are crucial for sternal and incisional healing. Pain typically improves within four to six weeks. Pace yourself and gradually resume activities, limiting heavy lifting (nothing over 10 lbs). Fatigue is common as your body regains energy and strength. Let your body rest when it needs it.
What to Expect: Emotional Recovery
This period is often characterized by a wide range of emotions. You may feel grateful and happy at times, while also experiencing irritability, disappointment, guilt, or depression. These are normal responses that will improve over time. It’s important to communicate with your transplant team about these feelings and ask for support. The complexity of the transplant and the accompanying changes can lead to mood fluctuations. You’ll have access to medical, social, and mental health support during this time, so please utilize the resources provided by the medical team. Outside the hospital, maintaining close contact with your designated support person is essential, as is gradually transitioning back to a normal routine.
What to Expect: Rejection and Medications
Your risk of rejection is highest early post-transplant. Rejection occurs when your body’s immune system attacks your new heart. To prevent rejection, you will be prescribed high doses of immunosuppressant medications. Your immunosuppressant medications are critical to suppress your immune system and to prevent your body from rejecting the new heart. It is critical that you establish a reliable medication routine (e.g., setting alarms and using pill organizers) to ensure timely adherence. Missing doses of your anti-rejection medications increase your risk of rejection and injury to your new heart. If you miss any doses for any reason, contact your coordinator immediately for guidance. You will remain on immunosuppressants for life. However, your transplant team will gradually reduce your immunosuppression as you move further out post-transplant. It’s important to remember that you should never adjust your medication yourself; always consult with your team. Ensuring your drug coverage is up to date is crucial to taking your medications regularly. If your drug coverage changes and you need support in securing additional coverage or cannot pay for your medications, please notify your team as soon as possible.
What to Expect: Heart Transplant Follow-up

The first three months after your transplant require frequent hospital visits to TGH for various appointments, including weekly (then biweekly) blood work and rejection surveillance biopsies, imaging, clinic visits, and other necessary tests. Due to the frequency of visits, living within the Greater Toronto Area for at least these first three months is essential. This could be a financial burden to you and your family. A UHN social worker is available to discuss support options. Your immunosuppressant medication will be at its highest level during this period, increasing your risk of infection. Practice good hygiene (personal, hand, skin, and dental), maintain a small social circle, and avoid contact with sick individuals. Between appointments, monitor your temperature, blood pressure, and weight daily, and report any changes promptly to your transplant team These frequent appointments will help you stay connected with your transplant coordinator and cardiologist, who are there to support you throughout this process.

What to Expect: Getting back to Normal Life
In the first three months following your transplant, make these your key priorities:

  • Establish a Medication Routine: Create a system to ensure you take your medications correctly and consistently.
  • Prioritize Medical Appointments: Keep all scheduled appointments and communicate any concerns to your transplant team.
  • Focus on Healthy Eating and Drinking: Maintain a balanced diet and drink plenty of fluids.
  • Practice Self-Care: Prioritize your mental and emotional well-being through self-care activities.
  • Manage Pain Effectively: Follow your doctor’s recommendations for pain management.
  • Be Vigilant for Infection: Monitor for signs of infection and report anything unusual to your transplant team immediately.
  • Stay Active: Engage in regular light activity, such as walking, as advised by your medical team.
Illustration of a man sitting in a chair, reading a book. A cat is sitting in his lap.
Illustration of a woman walking with a child outdoors.
Learn more about living with a Transplanted Heart

The Post-Transplant Experience

The First Year After Transplant

Surpassing the first-year post-transplant is a major milestone! It’s time to focus on getting back to a routine and the things you enjoy, this includes returning to work and re-engaging in hobbies/activities, sports and travel. If everything is going well, the frequency of your appointments will likely start to decrease; the transplant team will start to space out your clinic appointments to every 6 months and eventually once a year. There will likely be less frequent changes to your immunosuppression medications, and you may no longer be required to have biopsies or Allomap/Allosure blood tests on a routine basis to survey for rejection. Instead, the team will continue to monitor your status with routine blood work (every 3 months) and will rely on you, to report any changes in your health status. Together, with the help of your Primary Care Provider, your transplant coordinator will organize screening to keep your health records up to date:

  • Bone Mineral Density scan every 2-3 years
  • Annual immunizations
  • Annual cancer screening
  • Routine dental cleaning every 6-9 months

Make exercise a part of your daily routine. If you have not already been connected with a cardiac rehab program this may be a good time to start increasing your exercise capacity and engagement.

The Post-Transplant Experience

Additional Transplant Surgeries

Rarely, heart transplant recipients may need a second transplant, known as a re-transplant, due to various factors. Over time, the transplanted heart can develop complications such cardiac allograft vasculopathy, a condition that causes narrowing of the heart’s blood vessels. Additionally, some patients may experience graft failure due to infections or other medical conditions. Advances in immunosuppressive therapy have improved long-term outcomes, but for some recipients, a second transplant becomes necessary.

Living Well Post Transplant

The Heart Transplant Journey: Stephanie’s Story

Stephanie was diagnosed with heart failure when she was just 18 months old. She lived with worsening symptoms until she received a heart transplant in 2023. Stephanie’s transplant marked the start of a physically and emotionally intense recovery. She speaks candidly about the unexpected toll of post-transplant depression and the ongoing mental health challenges she’s faced. However, through celebrating small milestones, leaning on the support of her partner and transplant community, and accessing therapy, she has gradually begun to heal and reimagine her future. Now over a year post-transplant, she reflects on the gift of extended life, her hope to return to music, and the deep appreciation for life that comes from facing mortality.

The Post-Transplant Experience

Living Well Post Transplant

Living well after your transplant involves adhering to your medication regimen, maintaining a healthy lifestyle, following your transplant program’s recommendations, preventing infections, and monitoring your health. These practices contribute to a healthy and fulfilling life for many years. While healthy eating and regular activity are important, the primary goal post-transplant is to feel well enough to return to a regular routine and enjoy life’s pleasures. Returning to work, spending time with loved ones, re-engaging with hobbies, and traveling are all things to look forward to. Recognizing that a heart transplant recovery is not always easy, transplant mental health specialists are available to guide you through coping strategies and provide resources to help you return to the activities you love. Many aspects of your daily routine impact your health, and these are choices you can consciously modify. Key controllable lifestyle factors that contribute to well-being post-transplant include:
Eating Well
A heart-healthy diet rich in fresh fruits, vegetables, and whole grains is crucial for your new heart’s health and reduces the risk of complications and further heart disease. Follow Canada’s Food Guide for healthy eating tips. Continue to follow a lower sodium diet (less than 2g of sodium daily) and limit saturated and trans fats. Increase healthy fats found in fiber-rich foods and omega-3 fatty acids. Drink plenty of water daily.
Moving Well

Regular physical activity and exercise are vital. You should aim for 30 minutes of vigorous exercise daily. Exercise helps mitigate some medication side effects, particularly those from steroids. It also helps maintain healthy blood pressure, cholesterol, and weight. The complexity of the transplant and the accompanying changes can lead to mood fluctuations. You’ll have access to medical, social, and mental health support during this time, so please utilize the resources provided by the medical team. Outside the hospital, maintaining close contact with your designated support person is essential, as is gradually transitioning back to a normal routine.

Avoiding Smoking and Vaping
Smoking significantly increases the risk of strokes, heart, and lung problems. If you smoke after a transplant, your heart is likely to suffer irreversible damage sooner. You will remain on immunosuppressants for life. However, your transplant team will gradually reduce your immunosuppression as you move further out post-transplant. It’s important to remember that you should never adjust your medication yourself; always consult with your team. Ensuring your drug coverage is up to date is crucial to taking your medications regularly. If your drug coverage changes and you need support in securing additional coverage or cannot pay for your medications, please notify your team as soon as possible.
Screening Well

Start early and stay up to date on routine screenings. Regular visits with your family physician care team are essential, and you should report any health changes promptly to avoid long-term consequences. If you do not have a family doctor, please contact your transplant coordinator. Annual cancer screening is recommended, as applicable, including:

  • Full body skin assessment with a dermatologist
  • PSA and prostate exam
  • PAP smear and mammogram
  • FIT/Colonoscop

Staying current with annual vaccinations (such as the flu shot) is another preventative measure to protect yourself and your heart. Please check with your transplant coordinator and family physician before receiving any vaccines, including live vaccines.

Your immunosuppressant medication can put you at a higher risk of infection. Practice good hygiene (personal, hand, skin, and dental), maintain a small social circle, and avoid contact with sick individuals. Between appointments, monitor your temperature, blood pressure, and weight daily, and report any changes promptly to your transplant team These frequent appointments will help you stay connected with your transplant coordinator and cardiologist, who are there to support you throughout this process.

Illustration of a group of people surrounding a cake with candles.

Support Resources

Community Supports

Although one in five people in Canada over the age of 40 will develop heart failure, it can still be an incredibly isolating condition, especially for those receiving a heart transplant.

Engaging with a community of people with shared experiences can help you maintain or improve your quality of life and sense of well-being.

See the support resources available to Heart Failure patients
See the support resources available to Caregivers

Support Resources

HeartLinks Support Group

HeartLinks serves as a community for individuals who have undergone heart transplants, offering a space where patients can connect, share experiences, and receive emotional support throughout their recovery and beyond. The main goal of HeartLinks is to help heart transplant and VAD recipients as well as those on the waitlist navigate the challenges they face after surgery, including fostering a sense of community and resilience among individuals who are navigating life after a heart transplant.

Join HeartLinks
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Support Resources

Financial Resources

Additional information about Heart Transplant can be found on the UHN Ajmeera Transplant Centre Website

Partners & Acknowledgements

This Guide was created by a group of people with lived experience, including both patients and caregivers, as well as clinical advisors, including Heart Failure Cardiologists, Heart Transplant Surgeons and Transplant Coordinators. Thank you to everyone who contributed to creating and reviewing content, and a special thank you to our patients who shared their personal journeys.

This content was adapted with permission from the UHN Ajmera Transplant Centre’s Heart Transplant resources.

Before the Surgery: The Heart Transplant Wait List
Heart Transplant Surgery: From Hospital Admission to Discharge
After the Surgery: Living with a Transplanted Heart